Randy and Hospice

My mid-life crisis was not about having an affair, it was about changing the focus of my work. I went into “administration and management.”  It turned out way less expensive than having an affair. And I learned a lot. For example, “One’s sense of satisfaction is a function of one’s expectations.”  Works in business, works in life.

Retirement found me without a lot of expectations and I have been filling time in various ways with various expectations. One of my projects was to volunteer for Hospice work. There was no need for a medical volunteer so I found myself a “civilian” learning to support people in hospice.  The rules and regulations of a medical system were such that I was prohibited from opening medication bottles, cleaning up an incontinent person, or helping them off the floor if they fell. Expectations not met, I resigned.

There was value in this effort though. An exercise in the training for Hospice was useful to me personally. We played out the following in class:

Let’s pretend you are recently diagnosed with a terminal cancer and we are going to follow you over the next few years. Right now, you are physically doing pretty good but have treatments and tests coming on a schedule for months and if you are, “lucky,” years.  Take out 20 sticky notes and on one side of each, write something you really love, value, or enjoy. Any and every topic can be included. I wrote down: Volleyball, Basketball, drawing, painting, reading,  Chess with Tres, Kernie, Amber, Darby, Sloane, Trips to San Diego, Trips to Europe, Beer with friends, Pinochle on Sunday Afternoons, biking, picking fruit I have grown, walking the trail at Priest Point, trying out my Spanish on perfect strangers, writing, and (forgetting expectations) spontaneous sex.

We now put the sticky notes on the table in front of us and she recited the course of therapy, and progress. After a few minutes, she said, “Take out two of the sticky notes, and throw them away.” We students are confused. Do we choose the two or pick them at random? She says, “It does not matter.”  Well, I think it does………what Hospice patient gets to choose?

The process continues until you are on death’s door and you only had two left.  And then you died.

What hit me a year later, was that this was a metaphor not just for dying of terminal cancer, but of aging itself. NOT on my list was hiking in the Rainier National Forest, backpacking for a weekend in the Olympics, downhill skiing, and jogging. I have already had to give these up……and that process snuck up on me seeming perfectly normal. My adjustments to that just flowed without much conscious thought.

This is an interesting process, getting organized around aging when what you know and what you have experienced are at such odds with each other and contrasted with expectations.. As a young doctor I gave advice, straight out of the book, to young mothers about breast feeding. I was, “right”(book learned) but not especially effective or knowledgeable; my daughter’s breast feeding was extremely helpful and made me perhaps just a little more effective. But in the end, I was missing the magic sauce to really connect and make what was difficult for a young mother, easier.

And so it has been with aging—both giving advice without direct experience and setting up expectations, personally. I could be empathetic, relate statistics about a given situation, but there is no secret sauce. I am reminded of a Hospice Doctor from San Francisco whose father was to have Cervical neck surgery that could leave him paralyzed. He was frail and old. The doctor spent hours with him going over choice points and directives, and what to do if things did not go well. Half way across the Bay Bridge, she realized she still did not know what he wanted--really-- and turned around to reconcile that. His point of view and request was anticlimactic. The ending happily, went well.

So experts struggle with how to be effective and lay out expectations like all the rest of us.

My old patients sought advice, but not really—-They had expectations, some obvious and most not so much so. I rarely had the time to really explore and collaborate and find that solution to their need.  What have I come up with I mostly hold to and do for myself:

Exercise daily.

Get your sleep.

Don’t drink so much.

Be flexible when things don’t go your way.

Up date your will and identify clearly who will speak for you when you cannot speak for yourself.

Get rid of your junk. A corrolary: actually ask your kids if they want your junk—be it your house, pictures of your grandparents, your diaries, love letters, or high school diploma.

Think about a confidant, maybe an unrelated person to bounce your medical, legal, social questions by. They are less likely to have blinders on as your spouse or child have. Such a person can hear things from you things that you would never share with your spouse or child. And so they can be helpful in a way your spouse or child cannot.

Think about red Iines. What has to happen for you to decide, without your child coercing you, that  you are not going to drive anymore? Do you want to ever be on a ventilator? What has to happen to make you think seriously about moving to where there are more supports for your day to day activities?  What about when you start calling your car, "You know, that thing that takes me places…..?"

My first year in private practice, I saw a frail old woman who lived alone. She proudly lived alone; she was independent to a fault. She had a burn on her arm which was explained away, “Oh, I sometimes space out and find I have hurt myself.. I was cooking and suddenly realized I had my arm over a burner that was on. Another time, I woke up on the ground in my garden where I had been watering and boy, there was water everywhere.”

I suspected a form of epilepsy and initiated the referrals for that and advised her to not drive. “You don’t want to have one of these attacks as you drive by a school bus, right?”  I reported her to the department of motor vehicles. A month later, I found out she had attempted suicide after her license was invalidated. She would not see me in the hospital.

Expectations, satisfaction, and taking a step back to consider the road before you.

Insight.

Secret Sauce.

RAM

from 1970